Quick Medical Update

Quick, ha ha ha, who am I kidding?

As I mentioned here, last month we had our annual Craniofacial Team appointment. This week I received the Team Report and there were no real surprises. I'll leave it at that for now.

This week has been busy, I have good news & not so good news.

GOOD:

Based on the Team's recommendation, Austin was evaluated @ CHLA by a Speech Language Pathologist, KB, for his Passy Muir Valve use today. She was completely blown away by how well Austin tolerates his PMV. He was able to vocalize A LOT for her and he even ate & drank for her -- on command. All this while maintaining his Oxygen saturation above 97% for about 45 minutes. YAHOO!! She said she felt like she was working with an adult and not a toddler as he did everything she wanted with minimal fuss. I offered to let her take him home beamed with pride.

Actually, there was one mini meltdown while she was out of the room (of course), stemming from "someone" wanting to destroy a tiny plastic cup filled with juice & my attempts to remove said cup from a Death grip. Otherwise it was PERFECT! KB knows the Occupational Therapist who will direct the MBSS and volunteered to be present on the 27th; if she is unable to make it she will at least review the tape. She wants Austin to wear his PMV as much as possible, including all feeding sessions. She was very optimistic about his ability to move forward based on today's appointment. FINALLY someone with good news from CHLA!

Once she writes up her report and submits it to the Insurance for review & authorization we will start seeing her once a week for an hour. In other good news: Initially (during the Team appointment), I was told that these Speech Therapy sessions with KB would be purely to get Austin to tolerate his PMV and NOT to focus on language goals. Today during our Q & A she said that language goals were definitely on the table and we would absolutely be working towards feeding and language both. Can I get an AMEN?



NOT SO GOOD:

Austin started with a fever of unknown origin last weekend. This was enough to finally warrant the use of the Big guns, TOBI.


Not this TOBY:





This TOBI:




Dr. Pulmo finally agreed, in order to help his lungs fight some crazy bugs he has swimming around in there, Austin needs to be on prophylactic antibiotic breathing treatments. Enter Tobramycin. So that will bring the total to 6 breathing treatments a day. Lovely! (insert sarcasm).

The treatments will start as soon as the Pharmacy delivers the Sharps container & alcohol wipes they "forgot". Austin will do one month on & one month off TOBI until further notice. Tobi nebs are primarily used for Cystic Fibrosis patients and have a bit of a bad rap. No, Austin does not have CF, but he does have bacteria in his lungs that are consistent with CF and somewhat common in Trach patients. Hopefully in September when we return to see Dr. Pulmo there will be some good news in his next Trach culture.

Personally, (although I ASKED for this medication), I am a little wary of it.

1.) Because I heard that Toby STINKS! Literally. Stinks.

2.) We will need to use a needled syringe to draw the medication from a vial. I am no stranger to drawing meds in syringes, but until now they had all been non-needled syringes. It just makes me a little more than nervous to have these around. I HATE needles. Austin will not be stuck with the needles. Thank God for small mercies. The medication will be mixed with a saline solution and then used in a breathing treatment.

Regardless of my hesitation, we will begin soon. Keep your fingers crossed that this is the answer to keeping the crazy bugs at bay this coming winter.


Tomorrow we will have the BIG reveal of Austin's AFOs.

Thanks for peeking,